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| kids at bush gardens in tampa |
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| riding river rapids wonder what dr reinstein would say if he saw this |
Terran's life revolved around hosptials doctors and Bush gardens yes bush gardens our local amusment park which we bought
season tickets for the boys many weekends were spent strolling around the park watching animals and riding those awful rollercoasters
terran loved so much each time we had a planned surgery or such we planned a day at the park for terran to look forward to
sometimes he would ride a single ride all day long or simply live at dinosaur world all day playing with all the other kids
in the water park. His quality of life was being affected and that hurt me the most see i can only do so much about medical
stuff i can tell doctors this or that is wrong but i could not stop those line infections no matter what I did it seemed every
time i turned around boom he was sick almost all major holidays and his birthdays were spent in all childrens while i could
do little about that I could make what life i could control more bareable like he hated hosptial clothes and the blankets
he said were itchy so i always made sure his room looked like his at home not a cold hosptial room that required alot of work
on my part oh my just moving terran is required several trips and the resulting bad back. and of course mommie needed things
as well like the recliners parents sleep in now theres an experience i could write a book about trying to get a decent nights
sleep in those chairs
There was so many changes when terran was placed on tpn so many surgerys that year the doctors kept trying to fix his stoma
but kept failing i wanted take terran back to dr weber but we lost terrans private insurance and he was only on florida medicade
now theres a challenge in itself trying to naviagte the vast world of how in the heck do i get this kid what he needed so
many roadblocks we filled dr weber in on what was going on with terran but florida medicaid kept telling me i had to go to
doctors here and but they kept not fixing things and terran kept losing presious inches of small bowel and not getting anybetter
finaly after a frantic call to our local state representive we were granted permission to bring terran to dr weber so he could
again revise terrans stoma. Wish i could say it worked and it did for a few short months but terran was in such pain with
feeds we placed him on antidepressants to try to alievate some of his chronic pain. Theres so much for a parent to learn
with a child like terran first his ostomy apnea monitor and oxygen and feeding pump now on top off all that he had this damn
iv line in his chest that required tremdous care. It was an undaunting task for me as a parent i tried to get nurseing for
us and few times was I successful. ONe time terran was dischaged from the hosptial after a yeast infection he had to be on
a drug called amphotercin (or ampho terrible we called it due to the side effects) terran wanted and needed to be home but
dr reinstein did not think it was ok wiht me doing the ampho at home well we got a nurse the first nurse the agnecy sent
out was nice she brought toys for terran to play with and even while terrans iv was infusing helped me fold clothes oh i wish
i could have kept her but a few days later they sent out the worst nurse i could imagine he stank was obese and snored forcing
terran into his room for his infusion (stating it was too dangerous for him to be out of bed) at the time i did not know
i had many rights so put up with this man in my home for several days each day he came i prayed he would not. It was about
this time i heard of a TPN confernce put on by a company called Nutrishare they were having a free conference at disney land
the next week i wanted so badly to go to learn all i could to soak up some much needed knowledge hey and a free trip to disney
why not i wanted to take my grandson michael wiht us but his mom and dad had split a few months earlier and had been fighting
alot
 One thing stood in my way of taking terran to disney no nurse wanted to acompany us they did not want to take the risk and
lose they did not care the advantages of attending this conference nor the fun terran would had no they only cared about their
jobs. This nurse made me so sick to my stomach we had a doctors appointment with Dr. Reinstein at Childrens Medical services
i had hoped to convice dr reinstein that I could take care of terrans meds should he be allowed to go to the conference when
we got there the nurse as usual was snoring when Dr R came in to the room he said "well mom can you handle it"
hum i asked the nurse what he would do should terran have a reaction to the ampho he said well he would stop the infusion
and call 911" I told dr r yep i think i can handle calling 911. SO the awful nurse was fired and I was from that day
on allowed to do ampho terrible at home by myself this was a big feat i was one of the first parents allowed to do this as
i was not an RN nor a nurse of any sort. A few days later we prepared to take terran and cephas to disney and the conference
we were so excited to be going. Sasha and her friend drove us down i said goodbye to michael and elexys both were in tears
they wanted to go with grandma so badly my heart broke at the site of those babes in the window as we drove away oh little
did i know that would be the last time i set eyes on my baby boy.
Dec 5, 2001 a day that changed our family for ever while i was in orlando terran the boys and myself were checking in and
sitting down for dinner. The boys were so excited all the lights the fancy hotel the hussle and bussel of the exciting world
that is disney and orlando we took pictures with mickey mouse and as the first night festivities came to a close we took a
walk to downtown disney to filled us with excitement we were so tired when they closed we did not want to return to the hotel
but we had to get up early for the confernce the next day. We returned at 10 pm cephas jumped as usual in hte shower terran
who lived for tv like all boys his age plopped himself down on the bed and settled for cartoons while I prepared his nightly
tpn and ampho i noticed on the phone a message light was lit not knowning what was going on i tried in vain to figure out
how to work the damn machine i finaly gave up and went back to making terrans tpn. Sasha and her friend had been scouting
downtowns younger hot spots and i knew she would be back soon so figured she could figure out the darn machine for me. I
had just finished hanging terrans tpn when there was a knock on the door thinking it was sasha and her friend coming back
i went and opened the door forgetting i was still wearing mask and gloves from getting terran on his tpn. But it was not
sasha at the door a Sherrif was standing there he asked me if i was kimberly robinstein and i said yes. He said he had an
urgent message for me from the tampa police department and i was to call right away. Cephas had just come out of the shower
i went to the phone and called the number i had bought a phone card earlier in the day so i could call later and tell elexys
and michael all that we had seen. The voice on the line said "mame i am sorry to inform you your grandson has been
killed." in that second my world crumbled my baby my mickey gone how why i screamed as he gave me the details of his
death then i asked about cassy and how was she was the other kids ok.
Sasha and her friend came home a short time later and I had to tell her the news she fell apart while i comforted her kept
telling her that terran and cepahs were there and they needed us to be strong in front of them i put on cartoons for them
and we went out in the hall while i went over details of how mikey had died. It seemed that cassys boyfriends dad had come
over to take her to the store since i had not had time to eariler and some how when he was leaving michael slipped over the
saftey gate and was accidently run over by her boyfriends dad. Michael was dead my family distroyed all in an instant i had
to make decsions some would later critize me for but I did what I felt best for the smaller children at the time. I quickly
called tabatha who already knew what happened and was there she told me michael had died at 8:30 pm and they were just now
taking him away i told her to bring cassy to me in orlando and I would take care of her i knew she would be in an awful state
as would my other children i did not have time to cry too many depended on me and looked to me for support. My first thought
was to run home and be at cassys side but we were here in this hotel where i could provide my kids a few days of solitude
till we had to face reality and there was terran to conisder his health was frail and stress played a big role in him being
sick so we had to protect him at all costs from being under too much stress. I decided that we would remain at the conference
till sunday and then return tabatha and her sisters would return in the am and make arrangments for michaels funeral. while
some may think it cold of me to do this i had so little means at the time to give my kids any fun things this was a rare opptunity
for me to meet with doctors and learn of tpn and lines and how to better care for terran there was nothing I could do at home
except cry and die so we stayed and i did learn alot the boys while sad at michaels death did have fun for a few days anyhow
at disney Filling them with some good memories before we had to accept the bad. When we returned on sunday all hell had
broken loose my son in law micheals dad demanded michael be buried in Illinois where we all came from I had already bought
a plot and arranged for michael to be put to rest in our local cemetary but cassy ever the mom agreed to let michael go home.
She could have fought but it would have ment michael being placed in a freeze till they battled it out in court which I know
in my heart she would have won but she could not bear him being put in a freezer like a piece of meat. So we had a funeral
for him here it was horrible police had to be brought in due to my son in laws family came down and blamed cassy for michaels
death there was alot of tension in the air that day but no one beat anyone up and michaels last moments were of peace and
love surrunding him my heart broke at the site of him in his little coffin the younger kids were not allowed to attend the
funeral dennis and I switched off so each could attend and the smaller kids at home were ok. We took lots of pictures that
day and while some thought i was a goul those pictures later on were brought out and now that the pain was less real those
pictures are treasures of a little boy we all loved that died way too soon. We did travel to illinois later in the week
to watch them bury him back home unfoturnly it was too much stress for terran who had to be admitted shortly after we got
back. With grief so fresh and his death local news all the nurses at all childrens knew of micheal after all he had come
here many times to visit he loved running around the garden area with grandma while visiting terran each tried to comfort
me in their own ways it was good terran was sick because child life was asked to talk to him and he was able to get some of
his feelings out thats one of the things i loved about children's the child life staff who makes each child feel so special
terran for many years learned early that these people were key to his getting the many many toys he accumilated over the years
and as he got older his key to the video and game closet. With them at his side he learned ot grieve and in the coming years
they would again and again provide him with ever needed support and love.
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